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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About siouxsie

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  1. Basically, I'm looking for opinions on when testing may be most accurate and which tests does everyone here find are the most accurate. Since I was diagnosed w/ celiac 19 mos ago, both my kids (ds@15 mos &dd@ 6yrs.) were tested and found to have the gene but no sign of the disease yet. GI said to have him tested again b/t 2 &3. I'm hoping for the most accurate results with the least amount of testing. Should I just wait till he's 2.5? How long before the test will he have to be gluten full? I hate the idea that I have to put my kids through damage in order for them to be diagnosed. As my daughter gets older, I see more and more signs that were overlooked in me when I was her age...the irritablity, swollen gut that just makes her look pudgy. Her pediatrician agreed I should have her tested again w/ ds. Should I push for a biopsy if blood work comes back ok again? I just can't stand the thought of my kids going through life, suffering w/ broken bones, depression, irritablity, on and off digestive problems all to find out when they are adults it's always been celiac disease misdiagnosed.
  2. I'm celiac disease, Dx last Dec. My 2 children have genetic disposition, my hubby had weak pos. on blood work...won't do further testing or go gluten-free, not even gluten restricted, my m-i-l is under going testing, thinks she has IBS or reaction to diabetes medicine, was severly painfully bloated after eating 2 bagels in one day...she usually doesn't eat bagel b/c they constipate her. My mother figures I inherited celiac disease from her side of family but doesn't talk of having herself tested b/c she doesn't want to have to give somewthing else up (she's diabetic), also she mistakes the obesity in her family to mean they are all well nourished and couldn't possibly have a malabsorbtion disease. I'm surrounded by ostriches w/ their heads in the sand!!! I can't blame them...if I han't end up in er w/ such severe malnutrition issues, I probably would still have my head in the sand. I just don't know how to handle them all. I want them to all wake up but I can't seem to get their heads out of the sand. Most frustrating is the lack of support I'm getting fr. family about keeping children gluten-free. Sure, let me feed the children gluten until they end up in the er like I did...I'm sure no real damage will be suffered before than (ha! ha! ha!)O.K. sure, genetic disposition doesn't = celiac disease but if gluten is not in diet or atleast reduced, I think I'm keeping my kids from ever suffering excrutiating pain and loss of nutrients. I'm constantly praying for more specifics about this disease...I think the adults would react better if there were more black and white answers. We all have a few similiar symptoms and many different sympotms at the same time. SInce I'm the one who had been diagnosed and now gathers more information, I see their symptoms listed on websites or hear it from other people w/ celiac disease. Even the pedi GI said all first degree relatives should be tested but only the children of people w/ celiac disease are tested. I made him repeat that to my parents when I had the kids tested. How does anyone else handle their families and have you been able to get them tested and have them start living gluten-free? I have no sympathy or tolerance for any of their complaints until they do something about it. Thanks for listening. ----Suzanne
  3. My children's pediatrician is finally tired of hearing me say "I want my children tested" He than says "But they are growing fine." To which I say "I grew fine for 28 years before I found out." Now I have an appointment w/ the pediatric GI at Schneider's Children Hospital and I hope he is open to the symptoms I see and won't poo-poo my fears and concerns. I get all flustered when I'm with the dr.s that I forget all my great points I think of when I'm at home feeding my children. If anyone here has dealt with these dr.s, I would like opinions as well as any names of other GI peds in the NYC/LI area. ---Suzanne
  4. At 28, I finally found out I have celiac. Now my worry is how to handle it with my children. I'm convinced both of them have it but neither show strong signs. I see symptoms but that is because I'm looking. Neither child is sickly, but for example, my 9 mos old son never, and I mean never, spits up unless he has something w/ gluten and my 6 yr old is frieghtenly pale, even for an Irish girl . Her moods are starting to get a bit unruly and she is just beginning to complain about belly aches. Why aren't there tests that can diagnose without having to wait for damage to happen first? Just tonight I saw in some posts, there's a genetic test. Is this common and I just didn't know about it or is it still a work in progress? I heard of genetic testing for neurological disease when I was pregnant (also just found out Huntington's is in my family) but no one ever mentioned genetic testing for celiac. I just feel so frustrated and I want definite answers, which seem impossible!! I just want to make the best decision for my children and I feel like I don't have enough information to made a wise decision. Thanks for any advice. ---Suzanne
  5. Thanks for the tips. I agree about the bananas and my son loves them so I'll go back to letting him have them once in awhile. I thought of making my own rice cereal but wasn't sure how or if it would have the nutrients he needs...maybe I'll give it a try. His dr. said to stop the oatmeal and try the barely. I'm willing to try and see if he has a reaction since I'm still not sure if he's really having a reaction or if I'm over noticing things because I'm looking for something. Dr. also said I can add a bit of prune juice to his rice cereal so he won't get too stopped up which I think will be the best for us. I have a five yr. old daughter but we had no problems back then. Rather, we didn't know there was a problem. I'm the first in my family to be diagnosed w/ celiac disease and we always thought we had no food allergies in my family so I wasn't looking like I am now. I believe as mothers we need to trust our instincts but it's tough when my fears cloud my judgement. Hearing from you guys helps to calm my fears and encourage me to trust that I know what my son needs. I'm so glad his dr. is always available and really listens to my concerns. We'll see how things go. I'm sure I'll have new questions soon.---Suzanne
  6. My son is almost 5 months and I just found out that I have celiac disease. Since he is thriving on my breast milk despite the fact that I've only been gluten-free for about 2 weeks, his pediatrician has suggested he have cereal in addition to nursing whenever he wants in order to compensate for the low levels of iron and calcium in my milk. In just 3.5 days, the rice had binded him so badly that he could barely poop since it was so hard. Then I tried oatmeal which I think has given him sores in his nose and a rash, both very subtle. Had I not been diagnosed myself, I wouldn't even notice probably, let alone link it to the cereal...I would just attribute it to the cold weather. I'm stopping the cereal to see if the rash disappears and his nose heals but he is always so hungry I want to give him something. It's got me so crazed that I don't even know the right questions to ask his pediatrician. I hope to call tomorrow though. Any suggestions of what I can feed him? His ped suggested to hold off on veggies and fruit till 6 mos because of possible allergies from starting too early but feeding him cereal when he mseems to have celiac, or may have celiac just doesn't seem right. He loives eating so I need to come up w/ something. Any suggestions for what to feed him or what to ask the doctor would be greatly appreciated. Thanks. Suzanne
  7. I just found out I have celiac- sprue and as I'm eliminating gluten from my diet, my son is 4 1/2 mos. and his dr. is starting him on cereal. He has been successfully breastfed with one or two times we had to suppliment (one time I was in er for dehydration and the other was after the abdominal cat scan I had) His dr. knows my diagnosis and said to try all the cereals and look for a reastion. Well, only rice cereal has casused painful pooping so I'm trying oatmeal now. My question is this: could a runny, congested nose be a sign of a gluten sensitivity? So far he hasn't shown any other bad reactions to the oatmeal but I believe his slightly runny nose has gotten worse. It's so tough looking at everything he does and wondering is that a reaction to gluten? We're starting him on the cereal so that he gets more iron and calcium in his diet w/o giving vitamin suppliments. He has grown 6" and gained 9lbs in the last 4 months, but I'm worried about what may happen as we introduce solid foods. Any suggestions greatly appreciated. Suzanne
  8. I just found out that I have celiac-sprue. While waiting for the results I talked w/ some cousins and found out that two aunts and one cousin also suffer from horrendous gas, bloating, etc. w/o a clear cut cause. They think maybe lactose or perhaps it's their diabetes. Well, no one knows of this disease in my family but I do know that my relatives w/ similiar symptoms all have Huntington's disease which is a genetic neorological disorder. Just wondering if any one else knows of a connerction between these two diseases. Suzanne
  9. Thank you for your replies. It's so comforting to have people who can give answers and quiet my fears and guilt. So far my son has not shown any signs, thank God, and hopefully he will not have celiac. I've been sticking w/ Beech Nut Naturals because as far as I can see on the labels, there's nothing but rice flour for the rice cereal and oat flour for the oatmeal. It's so tough reading labels and knowing what exactly every indgredient really is. Knowing what to look for helps me feel less fearful but I hate waiting to see if there's a negative reaction to something i eat or he eats. Thanks again. Suzanne
  10. WHat are the chances my son has celiac sprue as I was undiaganosed and untreated all through his pregnancy? He certainly suffered w/ my malabsorbtion since he only weighed 5lbs 11oz (my daughter was born 9lbs 4 oz 6 yrs. ago)and has grown quite fast in the past four months to catch up to normal baby weight. I'm happily nursing and his pediatrician supports my doing so but has suggested he start baby cereal in addition to nursing to ensure he is getting enough iron and calcium. Now that I'm starting my son on cereal I'm really nervous since the rice binds him and I'm not sure what to look for as a reaction to other grains when I introduce them. I've only recently found out that I have celiac sprue and I'm just learning to identify my own subtle signs of intolerance. The obvious gas, bloating and diahrea are easy to spot----it's the itchy skin, slight rash, nose sores, joint pain and cramps that I never realized had to do w/ my diet. Any suggestions on what to look for in my baby? Any ideas of how common it is for parents to have children w/ it? Does it matter if you're gluten-free or not during a pregnancy? Do both parents have to have it to pass it on to children. Thanks for any answers. Suzanne